Written by Guest Blogger Melissa Lanty
RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up!
The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing. By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can do. I saw the scariest form of RSD/CRPS through my cousin, so when I was diagnosed with the same disease I was terrified. I joined support groups and found pages to follow online, but most of the time I met with people they were all in very different life stages than me, and the advice I was given was often about what I should give up, what I needed to give into, how to adapt to the fact that I am now disabled.
When I got the RSDSA newsletter in my mail and saw the page for a young adult with RSD/CRPS retreat, I immediately went to the website and signed up to go. It wasn’t until later, when I realized it would be a 4 hour drive, that I started to worry it would be me and maybe two other people sitting around talking about all the things we used to do. I couldn’t have been more wrong.
I arrived at the beautiful Shawnee Inn on the Delaware River Gap, after getting myself lost for only 10 minutes, and met 9 other amazing young women with RSD/CRPS. After throwing my stuff in a room, I joined the girls with the basic intros, where we are affected, swapping stories of what we’ve tried, thought about trying, and etc. about this disease. After talking for a while I realized that this felt nothing like the support group meetings I have been to. Instead of talking about what we can no longer do, we all talked about things we do despite this illness. We laughed a lot as we shared our stories and experiences, by the end of the weekend my chest was actually sore from all the laughing we did. For the first time since my diagnosis I met other people who deal with CRPS in a similar way as me. People who work a full time job, go for hikes, kayak rides, boat, swim, travel, and push through the pain like I do. We shared stories of bad flares and doctors who didn’t believe us, like I had with others I had met, but we also talked about college experiences, traveling, working full-time being on our feet all day, doctors still treating us like children, and so many other things that didn’t really apply with others I had met with RSD/CRPS.
When the weekend was over, I was sad to head back home and leave the group. Even though we had just met it felt like we had known each other for years. I sincerely hope there will be another retreat for this group again in the future. I look forward to more adventures with these women, and hopefully others to join us too. I’ll have to remember to be ready for anything, because this group lives life to the fullest for sure.